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Biotoxin Illness Overview

I’ve been quite busy lately. We just finished remediating our house for the second time. The holidays meant time away with friends and family. I’m slowly working on my next big article on mold testing but it’s quite involved so I need serious blocks of time. In the interim, I stumbled across CrowdMed and have been selecting a handful of cases that fit the profile of Biotoxin Illness and trying to clue in these poor folks about this illness. In the process, I’ve gotten a better sense of how beginners approach learning about this illness. Below is an overview I came up with to help these folks get oriented that I thought serves as a nice introduction.

Update May 15, 2015 From my experience, CrowdMed is all about assigning conventional diagnoses. If you’re interested in getting a diagnosis that sounds cool but that frequently offers little hope, that’s the place to go. The system is dominated by conventionally trained medical personnel. Nutrition, chemicals, environment, that’s all just a bunch of “quackery” to these folks. What was even more amazing to see is that even after I suggested to some CrowdMed patients that they consider that the host of symptoms they had been experiencing for years may be related to Biotoxins, they instead elected to believe they had Lupus or some other exotic and “incurable” disease.Update End

What Causes CIRS?

Chronic Inflammatory Response Syndrome (CIRS), also called Biotoxin Illness, is massive and chronic inflammation brought on by “biotoxins” that remain in the body because a portion of the immune system is broken. Why the immune system fails in this way is unknown. Nevertheless, the inflammation is readily seen with proper testing. Furthermore, with proper treatment that includes removing these biotoxins, inflammation corrects and health returns. So we know by deduction, that it is the inability to clear these particular biotoxins that is the problem. Note: Conventional testing that often includes CBC, SED rate, ANA, C-reactive protein, lymphocyte, immunoglobulins, thyroid, and a metabolic profile will typically return normal labs for folks with CIRS.

These troublesome biotoxins can come from numerous sources that include certain molds, some illnesses like Lyme disease, some blue-green algae blooms, recluse spiders, certain reef fish, and so on. Probably the most common source is molds found inside buildings resulting from high moisture or water damage. Alternatively, Lyme disease and others can leave behind biotoxins that will keep people with CIRS sick even after the bacteria or viruses are controlled. The main point being that the sources are varied and often ubiquitous to the environment of those with CIRS.

Many people that first learn of CIRS incorrectly assume mold is not a problem. To give you a better understanding related to mold exposure from water-damaged-buildings (the main source of these toxins), the 2011 National Institute for Occupational Safety and Health (NIOSH) report by the CDC states that roughly 50% of all buildings in the U.S. have a degree of water damage that will make folks with this type of immune system impairment sick. In other words, it’s virtually guaranteed that we all are being exposed to mycotoxin (myco meaning mold) levels that are problematic for people with CIRS regardless of our home or work environment. The exposure could come from the local grocery store, hardware store, or the homes of family and friends. Don’t take biotoxins lightly.

Common misconceptions are that either mold can only cause allergies, that it’s everywhere so it can’t be a problem, or that the buildings people spend their time in aren’t moldy. When it comes to the biotoxins that mold emits, and are frequently the main driver of CIRS, we’re talking about nano sized particles. Even the minutest of air currents can disperse them through out an entire building. For example, forced-air heating and air conditioning systems are like huge vacuums that readily pull in these microscopic particles into the ductwork and then disperse them through out the entire building.

While I’m on the subject of mycotoxins, the only proper way to test for the presence of these mold biotoxins in a building is a test that looks at the DNA level. This test is called an ERMI test and the best lab is Mycometrics. You can order a do-it-yourself vacuum canister or dust cloth (Swiffer) kit. In general, an ERMI score above 2 is not acceptable for people affected by CIRS. You can further interpret your test using the HERTSMI-2 scoring system. Note: Lack of smell or visible mold are absolutely NOT accurate when it comes to mold testing!

What Are the Effects of CIRS?

With CIRS, your body becomes chronically inflamed like when you’ve got a really bad flu (only much worse) so you feel awful. As the illness progresses, you can develop among other issues auto-immunities (myelin antibodies – the protective sheath around nerve cells, gliadin antibodies – a protein found in gluten, cardiolipin antibodies which impact circulation, antinuclear antibodies – used to test for lupus but make sure vitamin D levels are not the cause, antineutrophil cytoplasmic antibodies – used to measure for ulcerative colitis and such, along with actin antibodies), hormonal imbalances, neurotransmitter imbalances, shortness of breath, chronic fatigue, neuropathy, chemical sensitivity, heart issues (tachycardia – fast rate, palpitations – pounding, acquired pulmonary hypertension – high blood pressure in the lungs that makes the right side of the heart work harder, low pulmonary artery systolic pressure associated with Postural Orthostatic Tachycardia Syndrome (POTS)), anxiety, depression, bipolar disorder, not to mention the cognitive issues brought on by swelling of the frontal lobes, the hippocampus, and the cerebellum in the brain along with shrinking of the caudate – see the work of Dr. Ritchie Shoemaker who has collected data on over 10,000 patients and is the leader in CIRS. Put another way, CIRS impacts multiple systems in the body resulting in a multitude of symptoms. The number and range of symptoms is far reaching. To get a sense of range of symptoms you can check out a blog I wrote called “Are You Moldy – Symptoms” .

How Is It Diagnosed?

As noted, you can not test for biotoxins in the body directly. There are blood tests for mold but they are only helpful for acute exposures. There are urine tests for mycotoxins but these are unproven. If you’ve had Lyme, I’m sure you’re well aware of testing limitations. The proper way is to look at your HLA DR genes, your symptoms, and specific lab work. In combination, a doctor experienced with CIRS can readily tell if CIRS is at the core of your health issues. More specifically, blood tests like C3a, C4a, TGF-beta1, MSH, VIP, VEGF, and so on will be out of range. I talk a bit about the methodology for evaluating these tests in the same article “Are You Moldy – Diagnosing Biotoxin Illness Using Labwork”. Note: Chronic Lyme, CIRS, Fibromyalgia, Chronic Fatigue Syndrome, and others have a great degree of symptom overlap so lab work is vital. You can not diagnose based upon symptoms alone.

Ideally, you’ll work with a physician experienced in CIRS. Unfortunately, there aren’t a lot of these experts. As such, should you decide to work with an inexperienced physician to help make the initial diagnosis, make sure to use the labs and directions found on Dr. Shoemaker’s Physician’s Order Sheet June 2014. Furthermore, given that the phlebotomist will likely never have done many of these blood draws, it’s an imperative that you call ahead and insist that the local blood draw center contact the main office for proper directions. Even then, it’s not uncommon for labs to be improperly done so you’ll need to be diligent. Below are a couple of links that may be helpful with testing.

How Is It Treated?

Without treatment, people with CIRS will NOT get better simply by limiting mold exposures, by killing Lyme bacteria, by getting away from algae blooms, and the like. In fact, they will continue to get worse as the effect of the inflammation induced by the trapped toxins becomes systemic. The slide into ever worsening health can either be slow or quick depending on various factors.

The only caveat to this statement regarding recovery is for those for whom mold is an issue, then a small group of people like mold guru, Erik Johnson, have been able to get better by practicing “extreme mold avoidance” alone. The Paradigm Change website run by mold expert, Lisa Petrison, has free download links that cover extreme mold avoidance in two books entitled “Back From The Edge” and “A Beginner’s Guide to Mold Avoidance” – see the right-hand sidebar. They’re full of good information. For those with the cash, I’d recommend supporting their work by purchasing a copy from Amazon.

Fortunately, Dr. Ritchie Shoemaker has painstakingly developed a very precise, multi-stepped protocol for treating CIRS. It begins with testing to make sure your home and work environments are safe along with the use of a biotoxin binder that you ingest four times daily. There are two proven binders. One is Cholestyramine and the other is Welchol. Both of these are very safe and effective at removing these unwanted toxins over time.

Given the variability in genes, length of exposure, types of toxins, and the like, the physician will implement the various pertinent steps of Dr. Shoemaker’s protocol based upon extensive lab testing. This is a step-wise process wherein Dr. Shoemaker has determined a specific order of treatment. As the benefits of each step are seen through follow-up lab work, the next step is taken.

It takes an experienced physician. There are many nuances to ensuring good and relatively quick results. Even then, it’s not uncommon for this process to take a year or longer to complete. Nevertheless, you can recover your health. I remember being so happy when I was finally properly diagnosed even though I knew the road to recovery would most likely be long and bumpy.

13 thoughts on “Biotoxin Illness Overview”

So sorry you have to remediate again! We’re in an ERMI -3.6 home, with the bedroom ERMI -6 (yes, minus), and I’m still having issues in a couple rooms. It’s quite a sleuthing job, and then a task to figure out how to most-affordably AND effectively solve the problem. Your ozone postings have been livesavers for us. Though it’s not solving the problem we have currently (moldy infiltration from the crawlspace into certain rooms), it’s keeping it at bay.

Thanks for this wonderful writeup on biotoxin illness. Excellent work.
I found this page on the site by searching for info on VIP. I’m just about to that stage in the protocol…a post on that would be lovely when you eventually get time.

Have you ever heard of anyone who has started CSM and had their VCS get worse by the end of the month? I’ve been taking CSM for about 3 weeks now. MarCons are negative. ERMI was 1.61. Why would my VCS get worse?

I have not heard of this but don’t really have any data other than notes from Dr. Shoemaker saying most see improvement in VCS within the first month of CSM. Maybe others can pitch in here. Personally, I never really monitored VCS much. Also, the statement says “most” and not everyone. You’re right that MARCoNS can prevent improvement in VCS but as you said, you tested negative.

If it were me, I’d just wait and see. It’s just the first month. In time, if you don’t see improvement in labs and symptoms, you may have to start thinking about whether the ERMI was accurate or how you might be getting exposed in unknown ways. Have you read Erik Johnson and Lisa Petrison’s material? For myself, mold avoidance was and is huge when it comes to getting and staying better. If you go to Lisa’s website Paradigm Change, she’s still has free download links to “Back From The Edge” and “A Beginner’s Guide to Mold Avoidance” – see the right-hand sidebar. They’re full of good information. For those with the cash, I’d recommend supporting her work by purchasing a copy from Amazon.

In the meantime, you could do the HERTSMI-2 calculation from your ERMI as it’s more telling. For directions, go to HERTSMI-2 on Dr. Shoemaker’s website.

Hi Deanna,
My VCS worsened temporarily after starting CSM. Dr.Ackerley had mentioned that the basic labs can worsen initially as the toxic load is drawn out of the body.
Interestingly, my first VCS, in our ERMI +17 home, was a miserable fail. I knew I wouldn’t pass- my night vision had become so poor and it was difficult to read. While still in the home, and figuring out where to go, I started a methylation protocol. (In case you haven’t heard of it, there are other genetics that can create faulty detoxification in the body, besides [and potentially in addition to] the biotoxin illness susceptible haplotypes. Methylation and sulfation-related genes are a couple more that have good research and can be worked with.) To my shock, one month into a correctly implemented methylation protocoI could see my vision improve. To confirm, I retook the VCS test and passed! Even in our horribly moldy home, with a multisusceptible haplotype, and having had biotoxin illness at least 30 years. I really think this is an amazing testament to the healing ability of the body.

Then we moved into an ERMI -3.6 home, and I started CSM. A couple months later, I retook the VCS and was worse. Ha! Just a part of the process.

I definitely agree with Greg, wait and see is such sound advice. Overanalyzing just drives us nuts! This is a healing process, and we’re aiming for “trending upward” to quote Dr. Ackerley. Some backslides happen, it’s natural.

Thank you so much for thiis information. It was very helpful, Kim. I also have methylation issues, but am “treating” those already. I do have a large amount of staph, but with only one drug resistance. So they aren’t MARCoNs. I’m hearing that perhaps the staph needs to be treated anyway. So, I’m looking into that now.

Thank you, Greg. I will go check out the information. I haven’t done that yet. I did calculate my HERTSMI score and it is 8. I will keep in mind that perhaps something wasn’t quite right there. Scary, though! I’m sure you understand.

Right. I do understand that Greg. I guess what I meant is that I’ve heard these awful stories of people still just not doing well in their environment for one reason or another. Just hoping that’s not the case.

I totally get it. This illness is super challenging. When our bodies are physically on high alert, our minds can’t help being pulled into the same state. At least that’s what I notice for myself. As much as you can, try to be very gentle about this entire process. I do a lot of just simply being-present to what is type of meditation and this seems to help quiet my mind. When the mind quiets, then the body relaxes and has expanded opportunities to heal.

You’re able to take CSM and from our discussions, your brain seems to be working reasonably well. These are good signs. I wish I could get all the blogs written that I’m thinking of because from where I come from, Dr. Shoemaker’s protocol is maybe 50% of the puzzle. Strict mold avoidance, diet, food allergies, and others make up the second half. Anyway, you’re on the path now. This is wonderful news.

Thank you! I agree. I do spend time doing yoga or meditating every day. That really helps.

I started this journey realizing I had systemic yeast overgrowth and many other gut infections, adrenal fatigue, etc. When they didn’t get better, I kept searching. So I’m well aware that diet is a huge component. I eat a very very clean Paleo style/GAPS/yeast diet. I can’t imagine where I would be if I hadn’t been doing this for so long.

That does lead me to a question. I decided to try to avoid all fermented foods for a bit. In the past I’ve put a lot of emphasis on fermented foods. How do you feel about fermented foods on a “mold diet”?

Very cool. Nice that you shared that information because I think it’s important that readers hear that diet is important from others besides myself.

Well, I haven’t seen a lot of benefits with fermented foods for myself. Although, I’ve recently discovered I can’t tolerate foods high in histamines and this includes fermented foods so maybe this is part of the reason. Certainly working on improving the gut biome is very important so I definitely think either trying probiotics or fermented foods is worth it.

My “go-to” person on foods is Dave Asprey (and Doug Kaufmann). In the podcast For the Love of Fermentation #67 he discusses fermented foods with Jill Ciciarelli.

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